say THIS not THAT

What a workweek!  Last week I got a new project assignment, and have spent most of the weekend, workdays, and worknights crafting a slide deck for a software pitch, including making lots of graphics.  So these statistics infographics I’d been making every day — suddenly I had no creative energy left in my body, heart, and mind.

Tonight’s offering is, instead of a stats graphic, a chronic illness graphic. You can be equipped with better words, instead of saying frustrating or offensive things to a friend who has a disability, a chronic condition, an invisible illness.

say-this-not-that.png

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Invisible Illness Awareness Week

2009 Invisible Illness Awareness WeekLast week, I blogged a little about Invisible Illness Awareness Week, which begins today with online conferences and hundreds of bloggers taking time today to increase awareness.

I begin this post, still unsure how I want to use it.  I don’t want to complain about the issues I struggle with, and I don’t want to take a tone of anger or frustration.   I think I’ll just start with some plain old facts, and see where that takes me.

  • My diagnosis, Ehlers-Danlos Syndrome, has a prevalence rate of about 1 in 5,000 people.  This means that about 61,000 people in the US have EDS, and about 1.4 million people in the world.
  • Fibromyalgia is experienced in about 2% of the population, which is about 6.1 million people in the US and about 140 million people worldwide.
  • The prevalence rate for Rheumatoid Arthritis is about 1% of the population, which is about 3 million people in the US and about 70 million people worldwide.
  • Regular old Osteoarthritis affects about 27 million people in the US, about 9% of the population, and is the cause of 25% of visits to primary care physicians in the US.  If that 9% rate is globally applicable, this means that about 630 million people suffer from osteoarthritis.
  • About 265,000 people in the US currently have Leukemia, with over 44,000 new cases being diagnosed each year.   Deaths from leukemia, worldwide, account for about 3% of the 7 million deaths due to all forms of cancers.
  • About 8% to 12% of all people in the world will suffer at least one episode of Major Depression during their lives (in North America, about 17%).  And contrary to what some may believe, Depression can be fatal.  On average, 3.4% of depressed people commit suicide.  So of people currently alive in the US and Canada, about 57.5 million have or will have an episode of Depression.  And of those people, 2 million will die of it.  Worldwide, about 700 million people have or will have Depression, and about 24 million of those will commit suicide.
  • The prevalence of Herpes in the US is estimated at about 1 in 5 adults, occurring in about 45 million individuals over the age of 12.
  • Prevalence of Lupus varies around the world, from 40 per 100,000 people in Europe to 159 per 100,000 people of Africa or Caribbean descent.  About 1 million people currently have Lupus in the US.
  • Nobody is quite sure what the prevalence rate is for Asperger Syndrome, but one conservative estimate places it at 0.26 per 1,000 people.  This is about 79,000 people in the US, and 1.8 million people worldwide.  One estimate at the high end is 4.84 per 1,000 people, which would be about 1.4 million people in the US, and 34 million people worldwide.  The real numbers probably lie somewhere between the two.

Those numbers are pretty huge, aren’t they?  Hundreds of millions of people in the world, millions of deaths, and this is just a small sampling of chronic, invisible illnesses.  The people who struggle with these illnesses are all around us… and we don’t know who is struggling with an invisible illness and who is not.  There are estimates that suggest nearly half of all individuals have a chronic, invisible illness, though they may not all know it or have a firm diagnosis.  Half.  One out of two.  50%.  That’s nearly 152 million people in the US, nearly 3.5 billion people in the world.  That’s why Rest Ministries sponsors Invisible Illness Awareness Week every year.  That’s why I’m blogging today.

The next time you see someone who looks just fine getting out of their car in a handicapped spot, think about these numbers.  They may be part of that almost-50% who have an invisible illness.  Instead of becoming angry and confronting them, consider these facts, and maybe try a different approach.  Perhaps it’s time to try a smile of encouragement, or maybe asking them if they need help.

The next time a family member or co-worker tells you they’re feeling bad, try thinking before you say something like But you look good today! or But you don’t look sick! Be ready to listen, without making judgments, just being fully present in the moment and hearing what they have to say.  What you hear may surprise you.

Or, perhaps, if you are the one in two who struggles with the illness, remember that you are not alone.  Struggling with the symptoms and effects of your illness does not automatically make you lazy or weak or demanding or incompetent or any of that nonsense.  It just means you have to work a little harder than the other 50% of people.  No, it’s not fair, but it’s the life we have to live.  When you need to rest, rest.  When you need medications or ice or heat or a brace or a cane or a wheelchair, use them.   And try to remember that when people say thoughtless things to us, it isn’t necessarily a sign that they don’t care about us or don’t want us to feel well.  It just means that they don’t know what to say, in the face of our struggles and pain.

Now, go check out the schedule of virtual conferences this week — I’m sure you’ll find something there for you, or for someone you love.  You’ll see these…

  • Understanding how we uniquely deal with difficulties in life
  • Finding health insurance with a pre-existing condition
  • Super foods for super-natural health
  • Hearts of gratitude and joy
  • Coping with chronic illness in your marriage
  • Coping with crises on top of chronic illness
  • How to start a business when you are chronically ill
  • It’s okay to say NO: Building healthy boundaries
  • Parenting when you are chronically ill
  • Simplifying your home and housework
  • Real talk about men and chronic illness
  • Finding the job you desire and can do
  • When your child is chronically ill
  • Managing college with a chronic illness
  • Helping others understand your pain
  • Applying and winning disability assistance when you are chronically ill
  • Being a teenager with a chronic illness
  • Surgery preparation.

That’s quite a line-up, isn’t it?  I’m looking forward to several of these seminars, and I hope you’ll listen to at least one of them.

30 Things About My Invisible Illness You May Not Know

Invisible Illness Awareness WeekThis coming Sunday Monday, September 14, is the kickoff of Invisible Illness Awareness Week.   This week is a project of Rest Ministries, which provides support for the chronically ill in a Christian setting.  Invisible Illness Awareness Week is about both shining the light on invisible chronic illnesses, to help others understand that all around them — looking perfectly normal — are people struggling with a condition that is not obvious to an observer.  The week also provides support, encouragement, and help to those of us who have an invisible illness.  This year’s program is offered completely online, to recognize that it is difficult, if not impossible, for a chronically ill person to fully participate in a week-long conference in person… even if he or she can afford to travel to it and stay in a hotel all week.

As part of the awareness effort, I’m participating in the “30 Things” meme, to share about my invisible illness: Ehlers-Danlos Syndrome.

  1. The illness I live with is: Ehlers-Danlos Syndrome, Classical Type
  2. I was diagnosed with it in the year: 2008
  3. But I had symptoms since: birth.  I remember being diagnosed with “growing pains” when I was about 8, and I started spraining ankles when I was 13 or 14.
  4. The biggest adjustment I’ve had to make is: learning to forgive myself for not being able to do everything I want to do or feel like I should do.  I think most of us are harder on ourselves than on others.
  5. Most people assume: I’m not really sure, since I’m not in their heads.  I do get dirty looks when I park in a handicapped parking place, since I’m young and look “just fine.”  People I’m close to seem to assume that I’m doing fine unless I complain, and I don’t tend to complain until it’s probably too late.
  6. The hardest part about mornings is: waking up to the alarm clock.  I do much better when I can just sleep until I wake up, which is a fairly consistent time anyway.
  7. My favorite medical TV show is: It would have to be Scrubs.  The “serious” shows annoy the bejeebers out of me.
  8. A gadget I couldn’t live without is: my iced tea maker!  And my COMPUTER!  And my arthritis gloves!  And my super-wonderful, long-lasting ice packs!  And the microwave!  Hmm, I should probably stop now, huh?  🙂
  9. The hardest part about nights is: the nights I can’t sleep.  When my hands are hurting badly, they wake me up from sleep, and they’ll keep me awake if I’m not already sleeping.  The worst part of this is that they usually hurt too much to hold a book, so I’m just left there lying in the dark and thinking.
  10. Each day I take 7 pills & vitamins, plus 4 puffs on the asthma management inhaler and 4 sprays of my allergy nasal spray.  (And I know I’m not taking everything I should be.)
  11. Regarding alternative treatments I: wholeheartedly agree with the movement to call these complementary treatments.  I am very careful about herbs and other supplements, especially when I don’t know how they will interact with my medications or with my hard-to-medicate body.  Physical treatments, like massage and cranio-sacral therapy and even sitting in the hot tub, are very helpful for EDS.
  12. If I had to choose between an invisible illness or visible I would choose: You know, I’d actually stick with the invisible illness.  People say stupid enough things to us already (“But you don’t look sick!”); I can only imagine the stuff that pours out of people’s mouths when there’s an obvious illness or appliance one has to use.
  13. Regarding working and career: I am very fortunate.  I work as a software engineer, so I could do my job if I were nothing but a brain in a jar, and my employer has agreed to allow me to telecommute full-time as a reasonable accommodation to disability.
  14. People would be surprised to know: that I am a Dominican Sister, and that my experiences with illness have deeply formed and shaped my spiritual journey.
  15. The hardest thing to accept about my new reality has been: the many little losses that I’ve faced.  Because it’s so easy to dislocate or injure a joint, I’ve been afraid to go out for walks or bicycle rides on my own.  After 28 years, I am no longer able to play my flute, so I’ve had to give up my work playing for weddings and parties.  The days when I’ve had to set aside my plans to rest and tend to pain.  It seems like, as the boundaries of my life grow smaller, I end up starting the grieving process over and over, for each new little thing.
  16. Something I never thought I could do with my illness that I did was: learn to advocate for myself with doctors and with my employer.
  17. The commercials about my illness: ROFL!  WHAT commercials?!?!?
  18. Something I really miss doing since I was diagnosed is: the interaction with my co-workers at the office.  It’s hard to have as little human contact as I do, since I’m working 8 hours a day from my desk at home.
  19. It was really hard to have to give up: MUSIC!  I so very much miss playing flute.
  20. A new hobby I have taken up since my diagnosis is: hmm, I’m not really sure about this one.  I’ve tried a couple of new things, and they ended up hurting and cramping my hands.  I spend more time in prayer now, and I try to spend more time giving intentional support to others.
  21. If I could have one day of feeling normal again I would: finish unpacking after this move, get rid of all the boxes, vacuum the carpets, make a really nice meal, spend time at my favorite museum, and make some time to snuggle with my husband in bed.  Or, you know, something like that.  🙂
  22. My illness has taught me: that having a chronic condition does not make me a weak person, that it’s important to educate myself on my condition and recent research, and that every one of us is broken in some way… even me.
  23. Want to know a secret? One thing people say that gets under my skin is: “You need to…” or “If you’d just…”  Trust me, I’ve done a lot of research into my condition and into possible treatments.  I know you’re trying to help me, but you sound so condescending, and you’re not giving me credit for trying anything that has a chance of working.  If there were a magic bullet, I would use it, but there’s not.
  24. But I love it when people: offer help in small ways.  Open the door for me.  Help me carry in the groceries.  Notice when I’m struggling and give me a hand.
  25. My favorite motto, scripture, quote that gets me through tough times is: He rescued me because he delighted in me. Psalm 18:19 It’s not just that God loves us all, but that God delights in us.  I think about what it feels like when I am delighted, and I am filled with warmth knowing that someone feels that same way about me.
  26. When someone is diagnosed I’d like to tell them: you will be okay.  You will walk through the valley of the shadow of death, but you’ll come out the other side stronger.  There are more of us, and we understand.  Read the Spoon Theory, and take it to heart.  Find support anywhere you can.
  27. Something that has surprised me about living with an illness is: I’m the same person I ever was.
  28. The nicest thing someone did for me when I wasn’t feeling well was: listen to me.  And take out the garbage.  🙂
  29. I’m involved with Invisible Illness Week because: so often, those with invisible illnesses are overlook, mistrusted, or written off as drama queens. It is important to help everyone understand — even ourselves! — that we want to work, we want to contribute, we want to do things.  We’re not just lazy bums who want to lie around all day and collect disability.  Sometimes, we just need to count our spoons and rest a little more.
  30. The fact that you read this list makes me feel: all warm and mushy inside, like a bowl of mashed potatoes and gravy.  Thank you for reading all the way to the end.  Next week, I hope maybe you’ll think about those of us who are invisibly ill.  And I hope you’ll give a hand to someone – anyone – that you encounter who needs a little help.

Love and blessings to you in your journey!

Home from the Doctor

I took a hundred-mile drive (each way) to meet with a geneticist today.  She went over a detailed family history, went over my medical history, examined my joints, took a Beighton Score, and examined scars on my body.  And she diagnosed me with Ehlers-Danlos Syndrome: Classical Type.  The diagnosis of EDS did not surprise me, but I had been expecting the Hypermobility Type rather than the Classical Type.  There is no cure for EDS, and there really is no treatment, either.  To manage the disorder, we manage the symptoms.  Treat pain, use physical therapy to strengthen the muscles so that they can take some of the stress from the connective tissues.  Avoid activities – like contact sports – that are riskier for injury, and keep up with low- or no-impact exercises like walking, bicycling, and water exercise to keep the muscles in shape.  Be prepared for early-onset osteoarthritis.  And stay informed of the latest research and news.

My reaction, now that I’m home in the quiet, is mixed.  I’m glad to have this diagnosis confirmed, since it’s what I’ve strongly suspected since early this summer.  At the same time, there is a definite sense that today is a threshold.  All the days before today are different than all the days after today, even though I’ve had this inherited disorder since before I was born.  Today, I no longer suspect.  Today, I know.  I have an inherited connective tissue disorder.  My sister has it, and my mother, and my mother’s mother.  My daughter may well have it, too.  It has been amazing to read accounts of other people online who have this rare disorder, to read their stories and gasp, because it sounds just like my own life.  My mother and sister had similar reactions.  And when I call them tonight, they will know they have it, too.

I haven’t reflected on this a whole lot yet.  I’m sure I’ll have more maunderings to write in a few days, a few weeks, a few months.  For now, I’ll just say I’m glad I pushed the pain management specialists, and I’m relieved to have a name for this great unknown.  Now to grieve for the self I leave behind, and to look forward to shaping and forming the self I am growing into.

Trapped

I spend a lot of time in my mind these days, since my body doesn’t work quite right.  See, the connective tissue throughout my body doesn’t form properly, so my ligaments and tendons can’t hold my joints together the way they should.  If I move any of the joints in the just the right – or really, just the wrong – way, they will dislocate partially (really, the technical term for that is subluxate) or completely.  Sometimes I can pop them back in, though the doctors prefer us not to; of course, sometimes they pop themselves back in without me really knowing.  Sometimes I need a doctor or physical therapist to put them back in; and some of those times, it’s the physical therapist who says, “Wow, your second and third ribs are out again.  What did you do this weekend?”

So I spend a lot of time trapped in my mind, trapped in my house, trapped within the broken body that I’m afraid to use.  My work is mostly cerebral.  I’m a software engineer.  I do a lot of requirements and architecture work.  I’m on a lot of conference calls.  I write specs and process documents.  Basically, they’ve hired me for my brain.  If I could do the job without a body – if a brain within a jar could still operate the computer – then I could still earn my salary.  Of course, that means that when medication side effects (or the side effects of the pain itself) cloud my thinking or affect things like concentration or short-term memory, I get rather concerned.  Even if my body is broken, I really need my brain to work!

My brain has been thinking a lot about disability.  Am I disabled?  What does the word even mean?  I mean, I’m not in a wheelchair, but that’s probably in my future, since the connective tissue problem affects my upper body just as much as my lower body.  So anything I might use to help my ankles, knees, and hips – like a cane, or crutches, or a walker – well, that would put more stress on already-stressed hands, wrists, elbows, and shoulders.  To the average onlooker, I look fine.  In fact, I’m usually smiling, chatting, trying not to let the illness show.  It’s only when I think nobody is looking that I’ll allow the winces and cringes to appear on my face, that I’ll allow my gait to slow, that I’ll start to limp.  I’m 36 years old, and most of the time, I move like I’m 80.  Heck, most of the time, I feel like I’m 80.

My mother has this condition, too, but she only found out about it through me.  When she finally got a referral to a rheumatologist to look at her knees, in her late 40s, he told her she had the knees of an 80-year-old.  She’s since had both replaced.  Well, the joints of an EDSer wear out more quickly, because they are hypermobile; they move around a heckuva lot more than the joints of a so-called normal person.  My hands already show osteoarthritis on x-ray, and I can feel it.  Research also tells me that EDS patients also tend to have more advanced arthritis than their x-rays reveal… so if my hands are showing it, they’re already degenerating, and if the other joints aren’t showing it yet, that doesn’t mean they don’t have it.

So am I disabled?  It appears that, by some definitions, I am.  Of course, one I didn’t even know until recently that I could claim is that simply by having proportionate short stature, I have a disability that I can request reasonable accommodation for under the Americans with Disabilities Act.  But under the definitions in that same act, the major life activities of sleeping, performing manual tasks, walking, standing, lifting, bending, concentrating, thinking, and working are all affected by the chronic pain.  All of them – and those are all ones listed explicitly in the law, not ones that are lumped into other broad groups.

There are times I feel despair, watching my kids, watching other parents with their kids.  See, I can do the things those other parents are doing.  I can run and play and do that stuff… but if I do, I’ll be in bed for three days straight with the pain, unable to get up to eat or drink or work or do much of anything.  I can lift that heavy laundry basket and carry it back to my room, and then I’m going to need to rest for a while.  I can vacuum the entire house, but then I better not have any other plans for the rest of the weekend, not unless they involve ice packs, horizontal planes, and relaxation CDs.

Friday, I woke before it was time to get up for the day, and I rolled over to check the time.  I put my weight on my right wrist in just the wrong way, and it dislocated.  My wrist exploded in pain, and it shot up my arm.  I collapsed onto my stomach and just lay there for a moment, clutching the wrist with my left hand, under my chest and throat.  I felt it pop back into place, but it was too late; the wrist was sprained.  It still hurts like the devil.  It’s lightly swollen, and I’ve tried to ice and rest it, and to keep it splinted as much as possible this weekend.  In spite of this, I got the laundry done.  I got up to the grocery store to pick up heavy bins of cat litter and a giant bag of cat food.  And now I’m sitting at my computer again, trapped inside my beat-up body, trapped inside my beat-up brain.

There is no cure for my condition.  It is genetic.  I will live with chronic pain for the rest of my life.  I have cycled through the stages of grief several times this year, and I’m sure I’ll continue to cycle through them for years to come.  ‘Cause just when I think I’m there, I’ve finally accepted it and made peace with where I am — BLAMMO! — some new wrinkle comes along, sweeps me off my feet, and has to be dealt with.  I’ve had enough of those just this year.  I’m not just tired of them; I’m weary.  I’m bone-weary.  I wish I could sleep for a week, except, of course, that I never manage to sleep through an entire night.  There’s always something to wake me up, something to remind me that it’s aching and wanting attention.  And I just… well, I don’t know what I just.  I just don’t know.  I don’t know what I want any more.  I’m afraid to want.  I’m afraid to hope.  I’m afraid to dream.  I’m afraid to think about anything much more than what’s beyond my beat-up body, my broken-down brain.  And that’s pretty sad.

So I think I’ll call it a night, now.  Good night, my friends.  May God bless you this night, and may you find peace.

A bible for those with a chronic illness?

I was looking at the statistics for this blog, because I’m a geek and I enjoy looking at them, and I noticed that someone had visited my blog after searching for ehlers gospel.  Well, I’ve posted about my own struggles with Ehlers-Danlos Syndrome, and I’ve posted lectionary bits based on the gospel lesson for the day.  I don’t know whether this person found what they were looking for here, but something interesting sang to me from that.

What would a gospel look like for someone with chronic pain?  What would the Ten Commandments be for a person who has a chronic illness?  How would someone with an invisible illness rewrite the bible?  I invite you to help flesh this out some more in the comments.  I thought I’d start with the Beautitudes… and maybe with some of the blessed/woe statements like Jesus uses in Luke.

  • Blessed are those who suffer from a chronic illness, for they have come to know their need for God and for other people.
  • Blessed are those who feel pain, for they can see pain in others.
  • Blessed are those who minister to the sick, for they are the hands of God; woe to those who accuse the sick of having insufficient faith, for they only reveal their own lack.
  • Blessed are those who listen, for they will hear God’s voice; woe to those who speak thoughtlessly, for they will find themselves alone.

So those Ten Commandments?

  • This is the name of your illness, which affects every part of your life: _________.  Thou shalt learn all thy can about thine illness and its symptoms.
  • This is your physician, who is managing thy prescriptions.  Thou shalt not seek prescription medications from any physician but this one.
  • Thou shalt follow thy physician’s instructions for self-care, rest, and medications.
  • Remember thy spoon count, and keep it from running empty.
  • ….. do you have some more?

I’m finding myself remembering some of the stories of healing and recovery in the bible, and those are probably good things to keep in mind on days that may be more hurty than others.

I hope you find blessings in your journey today – peace!